Nuts! #SoCS

I first heard about the details of the Care and Force Act in the Netherlands a few days ago through a fellow mental health advocate. I’d heard of the bill being passed before, but never quite understood or cared what it entailed. Now I know, from both her opposing side and thesupporting side, namely my own long-term care organization.

As it turns out, the Care and Force Act impacts everyone who receives mental health or developmental disabilities services, whether voluntarily or not. Before this law, only those committed involuntarily to a psychiatric hospital, psychogeriatric nursing home or intellectual disability facility, could be subjected to involuntary care. Now, basically everyone who receives (or, I assume, is supposed to receive) care for a mental illness or developmental disability, can be subjected to involuntary care. Yes, even if you live at home. Support staff are allowed by this law to enter someone’s home without their permission and hold them down there, force medications on them, install cameras for monitoring the client, etc.

This all sounds pretty nuts to me. Of course, that’s what said mental health advocate said too. My care facility says that forced care is not allowed unless… and then they go on to list the law’s reasons involuntary care is allowed. This is a long list, including obvious reasons such as self-harm or aggression, but also “endangerment of the person’s development”. Well, WTF?

I understand the well-meaning intentions behind the law. For example, a client with Prader-Willi Syndrome, which makes them eat and drink without inhibition, can be prevented from accessing sources of food or drink. The long-term care facility said in this case (in a flyer by my care organization) they’d decided to disable the client’s bathroom tap so that they cannot drink like 5 liters of water at night. However, quite possibly, this could be affecting people like me who suffer with compulsive overeating. I am sensible in that I try to ask for help in preventing binges, but I mean, I’ve heard clients being told not to enter the kitchen because they eat lots of cookies and are prediabetic. Well, this is physical health, which I understand on at least some level. But isn’t this whole bill meant to make us all conform to the non-disabled standards of “normalcy” whether we want to or not?

And besides, there are huge budget cuts to mental health and disability services, so will this bill not just be used to facilitate lower levels of actually helpful care?

For example, I could in a worst-case scenario be confined to my bed at night so that I have fewer reasons to bother the night staff when I go to bed later than most other clients. Or I could be banned from using Facebook or the Internet altogether during certain times of the day for reasons such as my needing to socialize more, study, or whatever. Like I said, danger to one’s development is a grounds for forced care.

In theory, the law doesn’t sound too bad, but I can imagine treatment providers such as the ones in the mental hospital, whom I couldn’t trust, can misuse this law for very harmful purposes. Does this mean anyone deemed nuts or dumb, to use some slurs, is at the mercy of the so-called helping profession? It’s crazy!

This post is written for #SoCS, for which the prompt this week is “Nuts”.

Why I Am in Long-Term Care

The day 1 prompt for this year’s 31-day writing challenge is “Why”. I immediately thought of the question that keeps popping up in my mind whenever I meet someone new at the care facility: Why am I in long-term care? Today, for example, I met a student doctor who was touring our home. I informed her midway through our conversation that I don’t have an intellectual disability, to which she replied that she could tell. Well, duh! Even when I’m overloaded, like I was at the time, and experiencing pretty bad language problems, I still sound like someone with at least an average IQ.

So why am I in long-term care? To a casual stranger, I could just point to my lack of sight and they’d be satisfied. Not a doctor or even a medical student, I guess. The medical advisor for the funding agency understandably concluded that blindness alone doesn’t warrant 24-hour care. Neither does mild cerebral palsy. And, as regular readers of this blog know, autism, being seen as a psychiatric condition, doesn’t count.

They finally found a way around this situation by saying that my disabilities are intertwined. They are, of course. In multiple disabilities, the whole is more than the sum of its parts. For this reason, the short answer to why I’m in long-term care is because I’m blind and autistic and have mild CP, not because I have any of these alone.

This is the legal answer. The way the funding agency found around the stupidly close-minded look at disabilities the law requires medical advisors to have. The long answer is, of course, that my individual care needs mean I need 24-hour proximity of care.

I have significant executive functioning issues. These cannot be objectified by tests because I’m blind and the tests of executive functioning that are available, are all visual. For this reason, the medical advisor wrongly concluded that I don’t have cognitive impairments. I don’t have an intellectual disability, but that’s not the same.

These executive functioning difficulties make it hard for me to take care of myself. I can do basic self-care activities with reminders and prompting, but then still I often mess up.

People, including my support staff, have used my blindness as an excuse for my difficulty with basic self-care. Of course I can’t see when my clothes are dirty, but if I were just blind, I would be able to prevent the most common causes of my clothes getting dirty. Like, I would be able to prevent myself from drooling over them, or I would be able to find other ways around it.

People also use my blindness as an excuse for my needing proximity of care. If I were just blind though, I would still struggle to know when staff had left the room, but I wouldn’t feel overwhelmed by it.

But I’m not just blind. Had I been just blind, I wouldn’t have needed to apply for long-term care. And yet, paradoxically, my care ground is blindness.

First Few Days in the Care Facility

So I haven’t written in nearly a week. I wanted to, but on Monday, was still adjusting to being in the care facility. On Tuesday, I felt really off. Then yesterday my husband and I traveled to our new house, the house we bought, and to the solicitor to sign the paperwork. That was somewhat of a hassle, as I cannot make a signature that looks remotely like the one on my passport. So for this reason, the solicitor had two coworkers sign in my place. Thankfully though, the thing is now finalized and we’re officially homeowners!

My adjustment to living in the care facility has been harder than I imagined. On Monday, I did pretty well. Tuesday I started day activities. It was a good day weather-wise, so I was able to enjoy some time outside.

Then tuesday night I suddenly was overcome with shame about my care needs. It all makes me so confused, since if I truly function emotionally at a 16-month-old level, I probbably shouldn’t be able to feel shame. And yet I do. My father’s voice is in my mind like all the freakin’ time. So is my former psychologist’s.

Yesterday, my husband came to pick me up for the official stuff at 11AM. We returned to the care facility at around 6:30. I did okay other than obviously missing my husband. I rationalized that away though. He told me he was a little disappointed in how far the journey is from our new house to here. There will no doubt be a solution, for example me traveling to our house by train and ParaTransit taxi. Still, the conversation did upset me.

I’m constantly facing this bit of cognitive dissonance between the parts of me that are severely disabled and truly function at a young child’s level and the parts that can be married and have a normal life. I can’t and don’t want to disown either, but it’s a huge challenge finding the middle ground.

Besides, even if I wanted to, I can’t go back to my life before moving here. The old day center has a pretty long waiting list and they’ve most likely filled up my place by now. I don’t have a room to myself in the new house. I can’t go back to community support funding from long-term care. Now of course if I truly could disown the severely disabled parts of myself, I might’ve been able to find a solution to at least the last of these problems. Long-term care funding is available to those who live at home too, after all. Maybe I just need to admit that I’m too darn selfish to actually choose my husband over proper care.

Losing Myself and Finding Myself (Reena’s Exploration Challenge #96)

I remember when and where I lost myself. My old self, that is. It was November 2, 2007 at 8:01PM when I stepped onto the bus at Balustrade bus stop in Apeldoorn. I had decided this was it.

I phoned my old support coordinator at the training home. I’d just been told to leave the home’s premises, because according to the on duty staff, I was making them take unwarranted responsibility for me. I had come there in distress and a housemate had offered for me to spend the night with her, so that we had time to find me a new place to stay in the morning.

I wasn’t homeless. That is, I had a roof over my head. In the Netherlands, the word that translates to “homeless” also refers to people who are wasting away in their residence. And I was.

At 8:01PM November 2, I phoned my old support coordinator to tell her I was going to kill myself. I was on the bus and the bus driver and fellow passengers heard me. They called the police and, after a long wait at the police station, I was admitted to the psychiatric hospital in the middle of the night.

At that point, my old self went away. I lost the self that went to college, had plans for working and lived independently.

I’m still not 100% sure who will replace her. When and where I’ll find myself. My new self, that is. I know my old self is gone. Even though I live semi-independently now, I do not have anything close to a “normal” life, whatever that may be. But that’s okay. I know I will ultimately find a new eqwuilibrium, when I’m in a living facility that suits me.

In September of 2006, I wrote a post in my online diary about the two different images I had of myself. One was “white”. This image represented a “normal” life. Living independently, going to university, finding a job, marrying, getting children and whatnot. The other image, the “black” one, represented my need for support. It wasn’t that I needed 24-hour care, but that I needed more than just the once-a-week visit from a support worker to read me my mail that’s normal for people who are just blind.

By April of 2007, I knew the “black” image was coming true, but I was seeing the colors in it. I eventually did live independently and go to college, but I would get sixteen hours of home support a week.

And then that image too died, on November 2. It was hard. I grieved. But I didn’t give up. Gradually, I started to see how colorful a life I can have if I accept care.

The care facilities I’m looking at moving into, couldn’t be closer to the “black” image of myself. They are 24-hour intensive support facilities. Yet I don’t see that life as bad. I see it was exactly as colorful and rich as, or even more so than the “normal” life I envisioned for myself.

I am joining in with Reena’s Exploration Challenge #96.

Progress in Finding Long-Term Care

It’s been exactly six weeks since I got approved for long-term care, so that we could finally start finding me a supported housing facility. Things are moving slowly but steadily. Today, let me share how we’re doing.

Immediately after we heard I was approved for long-term care funding, my support coordinator contacted the care consultant for my current care agency. She made sure to get the paperwork in order so that, while we’re waiting for supported housing, I can retain my current support. After all, community support through the local authority was immediately stopped. My support coordinator also contacted the care consultant for the living facility in Raalte, which is with my current care agency too.

When it turned out the process with that living facility would be slow-moving, I proposed to contact the two blindness agencies to explore the possibility of my living there. One of them responded immediately with an appointment for an intake interview. This is, unfortunately, the one with the facilities in the far north and south and west of the country. Of course, we are talking the Netherlands, not America. However, my husband isn’t happy to travel up to two hours each week to visit me. We agreed on a maximum distance of one hour. This agency has nothing within an hour’s driving distance. We did however request that they help us by recommending accommodations a future living facility could make for my blindness. They will come by to observe me at day activities next week.

The other blindness agency has my file, but they haven’t yet scheduled an appoitnment to meet me.

I went to have a look at the facility in Raalte last week. It was great. The staff/client ratio is 1:6 to even at times 1:4 during the day and there is an awake night staff. They also have tons of sensory supplies, including a sensory room, rocking lounger and a bathroom with a tub. I will hear more about whether the psychologist and physician for this facility find me a good fit soon.

Then today I heard about another facility. It is with a countrywide Christian care agency. It is in the city of Ede, which is about a 45-minute drive from my current home. The facility primarily serves elderly people with intellectual disabilities. I don’t know whether that would be a problem. It might be, as the other clients are probably a lot less mobile than I am. Clients only have a bedroom to themselves, but I don’t mind. The care consultant would send my file to the psychologist for this facility too and then I may come for a tour.

It all makes me feel a bit confused but overall excited too. I mean, I still feel off applying to live in intensive support living facilities, being that I now live semi-independently. Of course, my husband does all of the housework, but still. It’s hard to believe that people suddenly aren’t rejecting me, saying I misuse care and leaving me to my own resources.

Who Am I Right Now?: Exploring My Identities #AtoZChallenge

Welcome to day 23 in the #AtoZChallenge. I had a topic for my W post in mind for a few weeks, but then wasn’t sure whether to pick that one. I am doing so anyway. Today, I am exploring the things that make me me. My “identities” can, of course, refer to my alters too, but I covered that topic in my letter M post already. Today, I am exploring my different roles.

I am a daughter. My parents are still both alive. I was a granddaughter (and some would say I still am), though my last living grandparent died in 2018. I am a sister and an aunt-to-be, since my sister is 20 weeks pregnant.

I am a wife. I have been together with my husband nearly 11 years and married over seven. My husband is by far the most important person in my life. Through him, I am also a daughter-in-law and sister-in-law. My mother-in-law is the second most important person currently involved in my life.

I am a blogger. I’ve had one blog or another ever since 2007 and really have been an online writer since 2002. I am also an author, though I’ve had only one small piece published in an anthology. It makes me proud nonetheless.

I am an advocate. Though I don’t engage in as much activism as I used to about ten years ago, I still consider myself a disability, mental health and autistic rights advocate.

I am a believer. Though I subscribe to “something-ism”, it does help me to feel connected to a higher power.

I am mentally ill. I am autistic. I am blind. I am multiply-disabled. I am a benefits claimant. I am a service user at a day center for people with intellectual disabilities.

These last few identities may be the most defining of me when I tend to introduce myself. That’s why I listed them last here. I need to learn to focus on the others.

Quality of Life: Its Impact on Me #AtoZChallenge

Hi and welcome to a late day 17 in the #AtoZChallenge. The letter Q post was what got me to quit the challenge last year, as I kept making up my mind about what I wanted to write about. Same today, until finally my husband suggested quality of life.

Quality of life is a public health concept determining the effects of health conditions or treatments on people’s functioning and wellbeing. It is a commonly-used term in assessing people a long time after an illness or medical treatment happened, to determine if treatment is worthwhile. For instance, in the mental hospital, we were expected to fill out quality of life assessments twice a year to determine if treatment was helping us.

Quality of life is subjective, but it is often tied in with objective measures of functioning. For example, someone who is unemployed is expected to have a lower quality of life than someone who has a job.

I feel very conflicted about the concept of quality of life, as in some cases, it is used to justify euthanasia or withholding of life-saving treatment. This is particularly the case with babies who are born prematurely. Here in the Netherlands, not all babies who can medically be saved, will be, as with those born under 24 weeks gestation, it is deemed that the risk of poor quality of life later on is too high.

I, having been born at the borderline of treatability in 1986 at 26 weeks, have always been concerned with this issue. In this sense, a comment by Dr. Fetter, who coincidentally was my treating neonatologist, in 2004, is striking. He said he sometimes meets former preemies whom he has saved about whom he thinks: What have we done?!” I was at the time 18 and just about to realize that I wasn’t going to be the successful university professor my parents hoped I’d be. I wondered whether I’d be seen as one of these “what have we done?” cases.

I’ve had some debates with my parents about quality of life. When I was in the NICU, my father asked Dr. Fetter what they were doing, setting the conditions so that I may survive? “No,” the doctor said, “we’re just keeping her alive.” He (or his nurse) added that, if my parents disagreed, they’d lose custody of me. My parents were legitimately concerned with my quality of life.

Now that I’m 32 and no longer live with my parents, and having told this story multiple times, I can somewhat distance myself from the feelings that come with this. Before this, I’d often feel that I had to prove I met my parents’ standards of a good enough quality of life or I’d sort of retroactively be left to die. This is, of course, nonsensical.

Kids: Being Childless Sort Of By Choice #AtoZChallenge

Welcome to day 11 in the #AtoZChallenge. For those who followed me on my old blog last year, I chose “children” for the letter C post then. I can’t remember what I did my K post on and am too lazy to look it up, so I’m just taking the opportunity to talk about children again. I hate the word “kids”, but oh well.

You see, I have no kids. At 32, this is a bit abnormal already and it’s becoming more so as I age. The reason I don’t have kids, is complicated. Let me explain.

As a child and teen, I always thought I’d have children as an adult. Even during the time, in my mid to late teens, when I thought I was a lesbian, I thought it would be a given that I’d have children. I didn’t imagine a man in my life, nor did I think of how else I’d conceive, but I always knew I would have kids.

This changed after my major psychiatric crisis when I was 21. For the first year or so, I was busy with merely surviving and getting to see a future for myself other than suicide. Then, my post-traumatic stress symptoms started to emerge.

When I was 27, I made the conscious choice not to try to conceive. I had in the meantime met and married my husband and he agreed. He would even support me if I’d want to get sterilized and said I would most likely have no problem geting the procedure done, given that I’m multiply-disabled. He’s likely right, even though this is extremely ableist.

I know I, personally, couldn’t care for a child. This doesn’t say anything about other people with my combination of disabilities, but it is true in my case. Having made this decision puts me somewhere on the fence between childless and childfree. I am in communities for both on Facebook and find that I’m a little out of place in both. Over the years, I’ve moved more towards the childfree side, as I am realizing I don’t experience my biological clock ticking. Rather, my wish to be a parent is more based on societal expectations. As I once said, I’d want to be a Mommy blogger. Well, I guess that’s not the right reason to try for kids.

Cerebral Palsy: And Other Effects of my Brain Injury #AtoZChallenge

Welcome to day three in the #AtoZChallenge. I am feeling a little off today, as my support worker canceled our appointment tomorrow and my husband will be home from work late this evening. For this reason, I’m feeling a little unmotivated to write. I hope that forcing myself to write today’s A to Z post anyway will help me snap out of the bad mood. Today, I am sharing about a disability that I have had since infancy, but that I didn’t know much about till a few years ago.

Like I mentioned on Monday, my autism diagnosis got taken away in 2016, because my then psychologist thought my having had a brain bleed as a baby precludes an autism diagnosis. It doesn’t, but it did help me gain some new perspective on my issues. Could I possibly be suffering from the effects of neonatal brain injury?

I asked my parents, starting with the obvious. I have left-sided weakness, affecting both my arm and leg, which I assumed was due to the brain bleed. I had heard of cerebral palsy and had figured out I might have this. I asked my father, but he didn’t answer my question. Possibly, he wasn’t told by the doctors, because my mobility impairment is relatively mild.

I did see a rehabilitation physician and had regular physical therapy until I was around eight. I also needed a cast on my left foot because my achilles tendon was at risk of becoming too short. Later, at age fifteen, I was diagnosed with scoliosis. This isn’t so uncommon that it alone warrants another diagnosis. However, coupled with all the other issues, I put two and two together.

Cerebral palsy, for those who don’t know, is basically a mobility impairment due to a brain injury acquired in utero, at birth or in the first year of life.

I finally went to my GP in 2017 to ask him, again focusing on my mobility impairment. This, after all, is the defining characteristic of cerebral palsy. I was just told I had acquired brain injury.

Still, in late 2018, I joined the national CP charity in my country. When I went to their conference in November, all puzzle pieces fell in place. Not only were my symptoms – not just the walking difficulties – characteristic of CP, but I met people with milder walking difficulties than mine who had been diagnosed as having CP.

There are five different levels of CP, depending on gross motor functioning (ability to walk or otherwise move around). People in level 1 and 2 can walk independently, though those in level 2 require some handheld mobility aids for long distances or on uneven ground. I would probably score as level 1 or maybe 2, but this motor functioning assessment is appropriate for children and adolescents only. There are also several different types of CP, depending on which limbs are affected and how. I probably have spastic hemiplegia, meaning CP affects one side of my body only.

Currently, I am not looking for an official CP diagnosis. I probably had one as a child, so digging up my old records may reveal it, but I’m not in a position to do so at this point. I also wonder what benefit I could gain from this. The support groups for CP on Facebook allow me in based on the facts of my brain injury and resulting mobility impairment. Besides, like my GP said in 2017, a physical or occupational therapist treating me for my brain injury would have to take into account the major disability of my blindness. Maybe, should I ever go into long-term care for the blind, I’ll be able to afford support for this.

A diagnosis of cerebral palsy requires mobility impairments, but a brain injury can have other effects. At the CP conference, the first presentation I attended was on overload. The same cognitive and affective difficulties that people who acquire a brain injury later in life can endure, can affect those with neonatal brain injury. In that sense, my psychologist may’ve been correct that my emotional and cognitive impairmetns are due to that.

Five of the Most Significant Events in My Life

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo